Well, it was fun while it lasted...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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BleepingBeauty
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Well, it was fun while it lasted...

Post by BleepingBeauty » Sat Jun 20, 2015 5:05 pm

Just an update on my dad and his xPAP experience. (I'm home in AZ now, btw.)

Quick recap: I spent over four months in FL recently taking care of my ailing dad. My mother's still recovering from shingles, so she's not well, either. My mother and I are finally done with our contentious relationship; the whole time I was there, Dad urged me to go home and get away from the stress she thrives on; I told him I'd gladly go home if he came with me, but he couldn't see that happening, as he doesn't think he'd be able to travel in his current condition.

Many of you supported me throughout the difficult process of dealing with the awful DME there and trying to get Dad set up with equipment, not to mention my very UNsupportive mother. She pooh-poohed the whole thing (as she did with everything else I tried to help Dad get better) and told me to stop wasting my time.

But we got through it. Dad was diagnosed with severe apnea (AHI 56) and, with my help, he got good equipment. With my encouragement and guidance, he was using the machine every time he laid down (whether to sleep at night or while relaxing in front of the tv). I just spoke with him today (my mother hung up on me earlier this week when I asked to speak to my father, but his caregiver was there with him today while she was out shopping, so I was able to talk with him), and he tells me he's not using the machine anymore.

He also told me he hasn't been sleeping well lately, and I told him that's likely the reason and urged him to start using it again. I doubt that'll happen, though.

Just wanted to say thanks to all who took the time to help keep me going during the fight for diagnosis and equipment. I'm glad Dad used the machine while I was there, but I feel defeated now that he hasn't got anyone to encourage him to use it and has put it aside. He still has difficulty walking and feels useless. He's in a wheelchair all the time now (was using a walker while I was there and occasionally made the effort to walk on his own, without it). He's unable to do anything around the house anymore and feels like he's just marking time; he resists going outside (not that there's anyone TO take him outside now) because he doesn't want anyone to see him in the wheelchair. I fought against that when I was there and got him out of the house pretty regularly, even if it was just to grocery shop, see other faces, and be a part of the world again.

I'm sure that not treating his apnea will hasten his death. Maybe that's a blessing in disguise...
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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poppi2
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Re: Well, it was fun while it lasted...

Post by poppi2 » Sat Jun 20, 2015 5:28 pm

BB,
You're a good and loving daughter, and your Dad knows it. I know he's proud of the person you've become. I'm sorry that things have turned out as they have.

Good luck with your therapy. Earl

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Re: Well, it was fun while it lasted...

Post by postitnote » Sat Jun 20, 2015 5:40 pm

PM'd
Morbius, are you bored?

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Sheriff Buford
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Re: Well, it was fun while it lasted...

Post by Sheriff Buford » Sat Jun 20, 2015 5:50 pm

Years from now, you'll remember your efforts and it will give you comfort. You seem like a wonderful daughter! May God give you many blessings!

Sheriff

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Sir NoddinOff
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Re: Well, it was fun while it lasted...

Post by Sir NoddinOff » Sat Jun 20, 2015 5:58 pm

The harsh reality is that you can lead a horse to water but you can't make him drink it (sorry for the obvious cliche, but it seems to fit in this case). It sounds like both your parents are depressed and getting super tired of the struggle to stay in fight. BB, you did all you humanly could, so try not to let dark thoughts color the past memories of your parents. Time to move forward into your life.

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BlackSpinner
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Re: Well, it was fun while it lasted...

Post by BlackSpinner » Sat Jun 20, 2015 7:20 pm

That is the most difficult thing about caregiving older parents. They are not kids that you can make mind you. They feel fully entitled to screw up their own way.

You have done your best and you know it. You have made the sacrifices and done the right things and that means you will be able to look yourself in the eyes in the mirror every day.

I, too, know this and have to keep telling myself it every day. (And watch my father screw things up and blame me)

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BleepingBeauty
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Re: Well, it was fun while it lasted...

Post by BleepingBeauty » Sat Jun 20, 2015 7:23 pm

Thanks, everyone.

Memories of Dad are good ones, rest assured; whatever thoughts I have of my mother are ugly, and I'm doing my best to get on with my life and forget her. I'm sleeping very well since I got home (I love and missed my bed, and there's no stress here); was only getting 5-6 hours a night in FL, and now I'm back to my customary 7-8. So her bullshit and that rock-hard bed I had to deal with are no longer corrupting my sleep.

I have no regrets about spending so much time in FL trying to help Dad, and I'll comfort myself with those memories when the time comes that he no longer shares the planet. I can't help worrying about him, though... Just glad I actually got to talk with him today.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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kteague
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Re: Well, it was fun while it lasted...

Post by kteague » Sat Jun 20, 2015 10:26 pm

Sorry to hear this. Although many of us have butted heads with a parent at some point in life, hearing your feelings toward your mother is sad. I know 2 other women whose relationships with their mothers were so damaged (and damaging) it was better to sever all ties. Kudos to you for tolerating the situation for those weeks on behalf of your dad. You certainly gave this a valiant effort.

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RogerSC
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Re: Well, it was fun while it lasted...

Post by RogerSC » Sun Jun 21, 2015 1:53 am

There are volunteer groups that work with seniors, something to look into in your Dad's area. Just getting someone to help him get out as often as possible would be helpful to motivate him to use his cpap.

I hate to sound pollyanna-ish, but I think that it would be worthwhile to look into what's available in your father's area (assuming that he could be motivated to accept the help).

There's also help for depression, if that's what's going on. My wife's mother takes an anti-depression medication that she gets via a doctor's prescription that's been very helpful for her in keeping her spirits up, which then motivates her to be up and around and to get out of the house. She also uses a walker, one that has wheels and handbrakes, etc. As well as currently doing Tai Chi (for balance) with music that she learned from a class, and also is taking short walks. All to the good. Just for the record, she's 88 years old, and has had several serious falls that have done some damage. So it really takes positive energy to get her going, but she wants to stay mobile so she works on it.

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BleepingBeauty
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Re: Well, it was fun while it lasted...

Post by BleepingBeauty » Sun Jun 21, 2015 7:33 am

kteague wrote:Sorry to hear this. Although many of us have butted heads with a parent at some point in life, hearing your feelings toward your mother is sad. I know 2 other women whose relationships with their mothers were so damaged (and damaging) it was better to sever all ties. Kudos to you for tolerating the situation for those weeks on behalf of your dad. You certainly gave this a valiant effort.
Thanks, Kathy. It is kinda sad, really, but I've been dealing with her for 58 years, and it's never been easy. We had our final blowout a few weeks ago, and I guess I'd just had enough; it was a very freeing feeling to think that we were done and I'd never again have to subject myself to the emotional rollercoaster I'd been on for so long. I no longer cared what she thought of me, so I was free to express myself without the fear of consequences. I have a friend in NYC who "talked me down off the ledge" several times while I was in FL; I spoke to her the night after the big blowout, and she said, "Previously, you've sounded broken. Tonight, you sound like you again." I really did feel free for the first time, and I knew I would be fine.

No regrets, though. I got to spend four+ months with my dad, and we've always had a close relationship. I'm proud of my efforts (on both of their behalfs), even if my mother didn't appreciate it. I know my dad did, and that's all the matters to me. My mother's always been a glass-half-empty type, always looking for the negative in any situation, and I've always been the opposite. *shrug*

The only downside (and there IS one) is that I ended up losing both of my cats while I was gone because my mother wouldn't allow me to bring them; they're not dead they're alive and well, but they're not mine anymore.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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BleepingBeauty
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Re: Well, it was fun while it lasted...

Post by BleepingBeauty » Sun Jun 21, 2015 8:37 am

RogerSC wrote:There are volunteer groups that work with seniors, something to look into in your Dad's area. Just getting someone to help him get out as often as possible would be helpful to motivate him to use his cpap.

I hate to sound pollyanna-ish, but I think that it would be worthwhile to look into what's available in your father's area (assuming that he could be motivated to accept the help).

There's also help for depression, if that's what's going on. My wife's mother takes an anti-depression medication that she gets via a doctor's prescription that's been very helpful for her in keeping her spirits up, which then motivates her to be up and around and to get out of the house. She also uses a walker, one that has wheels and handbrakes, etc. As well as currently doing Tai Chi (for balance) with music that she learned from a class, and also is taking short walks. All to the good. Just for the record, she's 88 years old, and has had several serious falls that have done some damage. So it really takes positive energy to get her going, but she wants to stay mobile so she works on it.
Thanks, Roger. Dad has a caregiver named Ed coming in a few times a week to help him in and out of the shower, dress him, etc., and he's scheduled to sit with Dad twice a week for "respite care" so my mother can go out if she wants to (but she often cancels the respite care). Ed is a very nice and capable guy, and I made arrangements with him before I left so that I could keep in touch with him and get updates (and notification if he saw or heard anything amiss while he was at the house). Ed is the reason I was able to speak with Dad yesterday, as he was there for respite because my mother had actually gone out shopping, so there was nobody to interfere with my phone call.

Dad's on an anti-depressant, but it's obviously not doing much. I suggested that he see the doctor to try another one, but he's down on doctors and refused to go. He really resisted going out of the house for any reason (didn't want people to see him in a wheelchair; a pride thing), but I was usually able to convince him to go out with me. Nearly every elder in FL uses a walker or a wheelchair or a cane or something, so I reasoned with him that (1) nobody (at the store or wherever) knows you, and nobody cares that you're in a wheelchair, and (2) you need to get out of this freakin' house and see other faces, feel the sunshine, and stimulate your brain. He would often relent when I pushed him on it, and he'd go out with me. Invariably, even when he didn't want to go, he'd tell me after the fact that he was glad he went.

At one point, I'd found a local non-profit medical supply place that loaned equipment to anyone who needed it, and I arranged for Dad to use one of those stationary peddling units so he could exercise his legs. I told Dad I was going to West Palm to pick it up, and he asked if he could go with me! But that was the only time he ever voluntarily left the house (aside from a doctor's appointment).
I hate to sound pollyanna-ish, but I think that it would be worthwhile to look into what's available in your father's area (assuming that he could be motivated to accept the help).
"Motivated" is the operative word here. I doubt that a stranger could get him out the door, and my mother sure wouldn't be a motivator. But I'll call the local senior center tomorrow and see if other services are available to Dad. What concerns me most about the current situation is that Dad's living with (and is totally dependent on) a very depressed woman, when he's already depressed, himself. Not a good combo. (I could and did counter that negative atmosphere while I was there, but now I'm sure it's pervasive.) I think it would do both of them a world of good if Dad could get out of that house frequently.

At 86 and in poor physical and mental health, Dad's ready to give up and let things take their course. (All of the men in his family passed in their late 80s, so Dad figures it's his time, too; he's resigned to it.) That was hard for me to hear. And at 83 and still a bitch, I'm positive that my mother resents having to take care of Dad. I believe she'll miss him when he's gone, to some extent, as they've been together for 62 years now (have no idea how Dad's done that), but she'll also be relieved.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Madalot
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Re: Well, it was fun while it lasted...

Post by Madalot » Sun Jun 21, 2015 10:03 am

BB,

I just read through this thread this morning. I am so sorry things have turned out this way, but so proud to know you because you are one fantastic woman. You did everything you could (and more) and as someone else said here -- you can lead a horse to water.....

I wish your dad had agreed to go with you, but understand at this stage why he refused.

Again, as others have said....

Please take comfort knowing you did everything possible to help and it's up to him how it goes from here.

{{{{{{{{{{{{{{{{{{{BB}}}}}}}}}}}}}}}}}}}}}

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BleepingBeauty
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Re: Well, it was fun while it lasted...

Post by BleepingBeauty » Sun Jun 21, 2015 10:26 am

Madalot wrote:BB,

I just read through this thread this morning. I am so sorry things have turned out this way, but so proud to know you because you are one fantastic woman. You did everything you could (and more) and as someone else said here -- you can lead a horse to water.....

I wish your dad had agreed to go with you, but understand at this stage why he refused.

Again, as others have said....

Please take comfort knowing you did everything possible to help and it's up to him how it goes from here.

{{{{{{{{{{{{{{{{{{{BB}}}}}}}}}}}}}}}}}}}}}
Thanks, Maddie. I do feel proud of what I was able to accomplish with Dad while I was there. I understand why he feels he can't travel to AZ, too; just wish things were different... For a guy who was always strong and capable, it's a shitty way to end up.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Madalot
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Re: Well, it was fun while it lasted...

Post by Madalot » Sun Jun 21, 2015 10:58 am

BleepingBeauty wrote:Thanks, Maddie. I do feel proud of what I was able to accomplish with Dad while I was there. I understand why he feels he can't travel to AZ, too; just wish things were different... For a guy who was always strong and capable, it's a shitty way to end up.
Yeah -- to a lesser degree, I know how what it's like. I was always independent and did everything I needed/wanted to do for myself. I worked, lived alone and took care of myself completely. Now, I need help to do basic things like cook, dishes, laundry, etc, and no way I can live alone ever again. But it is what it is and I am so lucky to have my husband who supports me in every way possible.

I just wish your mom was better. It makes me so sad to hear how badly your mother treats you and appears to treat your dad.

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BleepingBeauty
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Re: Well, it was fun while it lasted...

Post by BleepingBeauty » Sun Jun 21, 2015 11:21 am

Madalot wrote:Yeah -- to a lesser degree, I know how what it's like. I was always independent and did everything I needed/wanted to do for myself. I worked, lived alone and took care of myself completely. Now, I need help to do basic things like cook, dishes, laundry, etc, and no way I can live alone ever again. But it is what it is and I am so lucky to have my husband who supports me in every way possible.

I just wish your mom was better. It makes me so sad to hear how badly your mother treats you and appears to treat your dad.
Yes, you can sure relate. But thankfully, you have a very supportive partner to help out, so kudos to him. I wish he could rub off on my mother.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.